Worth seeing rheumy?

Hi guys. I was hoping I could get some thoughts. Sorry if it ends up being long- I'll ad a summary at the end.

I was told I have Palindromic Rheumatism a few months ago towards the end of summer. At the time I was mostly suffering with fatigue, but had started to develop some mild joint pains almost exclusively in my knees (some in fingers and elbows) and was suffering with a rather annoying issue in my leg where it was painful and getting numb-ish sensations and both legs feeling weak like they were having to carry a lot more weight than usual.

I'm assuming that was my first "flare" and after that things settled down to some intermittent aches and pains.

We decided on no medication because my pains are manageable and not damaging. Didn't want to be taking meds with potentially nasty side effects when I don't need to.

Recently though I have come into what I am assuming is another flare and it's different. Started off with me feeling more fatigued again, getting more aches and pains and the odd hot flash/ feverish moment. The aches and pains have now become more wide spread which I assume is quite normal, but the bit that confuses me is I am getting pain outside of joints or limbs. Main culprits are my ears and abdomen. They behave like my joint pains though- come on suddenly then go away in a short-ish time with me feeling totally fine in between. Today I had a handful of episodes where I got a bad enough pain in my abdomen that I had to stop what I was doing and grit my teeth to get through it. Only lasted a few seconds to a minuet each, but they were worse than any of my other pains.

I have called my doctor a few days ago because at first I thought the abdomen pain might be a UTI. They asked me to do a urine sample and gave me a short course of antibiotics just in case. I haven't heard back about the test so I assume it's clear.

I was wondering if it would be worth me having a talk with them about my condition though or possibly asking to see my rheumy. I'm not sure if this is a change in my condition that I should get checked or if it's just my PR coming in fully since it's pretty new.

My doctors aren't exactly the most understanding about my health and I haven't seen them since getting my referral. There is one at my surgery who seems a bit more understanding, but he's difficult to get to see. I don't know if this is worth me going through all that fuss for or if I'll just be told it's to be expected and hush up. And if I do decide to see a GP I don't know if I should just talk with them or ask to see my rheumy. I can't help but worry it's a sign that my immune system is becoming more blood thirsty and things are progressing into a different, potentially damaging, condition.

Any thoughts?

In short:

Newly diagnosed. In second flare. Different to first and includes pain outside of joints. Do I see doc?

Thank you so much for any responses. I am quite lost with all of this.

8 Replies
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Contact your rheumy darling.xxxx

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Call your rheumy nurses.......they will be able to judge if you need to see the rheumatologist or tell you not to worry.

PR throws up a lot of unusual symptoms .......but getting some professional advice will set your mind at ease.

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I don't have a rheumy nurse. I got diagnosed by a private referral and that was that.

Is that something I should try to get set up?

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On reading your latest post I am wondering if you are in the UK?

If you are, Do you know if the rheumy you saw privately wrote to your GP?

If he did your GP should now either refer you back to him with all your new symptoms, to possibly start on some sort of drug regime , or if this rheumy is at a local NHS Hospital refer you to his team there, if you don't want to keep seeing him privately.

Rheumy nurses are part of that team. I don't know if you can just get an appointment with them, but I would presume not as it is usually the rheumatologist who. Diagnoses & prescribes...& then the nurses oversee your reaction to the prescribed drugs, & when needed refer you back to the rheumy or any therapists you may need.

Hope that is clear? But if you are in the US it will be different.

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This sounds like more a puzzle for rheumatology than your GP. Do you have access to a help line that you can ring and discuss it with a rheumy nurse?

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Thanks :)

I saw my rheumy by private referral last time cos docs wouldn't have sent me any other way. I'm till on insurance atm so would probably go private again, but I'll need a GP referral to do that. I'll make appt to ask for one as soon as I can though. I've only seen him the one time, but he did say I could come back if I needed to.

Could probably do with seeing my GP anyway to make sure they're all up to date with things.

If you are on the NHS system do you get this stuff like nurses and things or is it only with more severe cases? My insurance will be ending soon so I'll need to work out all the NHS stuff at some point.

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Nurse availability varies on the NHS. Ask when you are sorted with a team.

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Thanks :)

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